This is a question that I have been asked repeatedly, not only now, but now and again over the past few years by friends, family, and from you, readers of my blog. You probably have noticed that I have a tendency to disappear for chunks of time, and reappear as if nothing happened. It has been a constant struggle this “why?” It is this why that is my everyday, and I have shied away from sharing it here, and with all of you. Now as I sit here writing this post I am shaking, I have spent most of my energy putting on a brave face (or an Instagram-worthy face), priding myself on never asking for help, and appearing to have this perfect life, with me as the strong female lead. Why?
After fighting with it, I have decided to share this story in hopes that it will help just one person. I have searched many hours for hope online, and if this can connect to even just one person I will consider it a success. Beyond that I am opening myself up to all of you because I want this to be a community, where you can come along on the journey, which means at times getting raw, sharing your struggles, and joys, but first I have to devulge my own.
Be forewarned — this story is a bit of a long one…
It all started November 2, 2011. I was sitting at my desk at work when all of a sudden this wave of lightheadedness came over me. It happened to come on with a headache, but that was not unusual for me. The feeling was bizarre, at the time I couldn’t put it into to words; I felt detached from reality, completely out of it in a way that truly scared me. I was sent home from work, and spent the rest of the day on the couch sleeping. The next 2 weeks I spent either in bed or in and out of the hospital, seeing numerous Neurologists, having CT and MRI scans, even a lumbar puncture (or spinal tap.) See at this point the headache nor the lightheadedness had not stopped for a single moment. None of the doctors, not even the neurologists, had any real answers. I heard everything from “it’s just stress” to “you just need to loose weight” to thinly veiled sentiments implying that this was all in my head. It was because of this, at this point, just a few days shy of the end of my 3 month probation period, I lost my job. So that was a fun thing to add into the mix.
I was diagnosed with Complex Migraines, still to this day I believe it was to shut me up or to simply get rid of me, because this diagnosis doesn’t fit my symptoms. Each time I questioned it I was always dismissed. One after the next each neurologist stopped seeing me. Apparently me standing up for myself, asking questions when I doubted them, or backing them into answerless corners, challenged them in ways they weren’t comfortable with.
I was put on a laundry list of medications, some that made me a zombie, others that made me faint, but none, not even the strongest narcotic, would stop the headache or lightheadedness for even one moment. After about a year of fighting, and seeing endless doctors, going to the university library and taking out neurology textbooks, researching all the hours in the day I could focus through the pain and lightheadedness, I gave up. I was living across the country from my family, and I have no one to be my advocate, and I had no more energy to fight. This challenged everything I knew from Grey’s Anatomy; doctors fought to find diagnoses and cures for the abnormal cases, they advocated for their patients. From what I found out, that was the biggest piece of fiction.
I learned to survive with the level of daily pain and lightheadedness to be my new normal. I still was not able to work a 9-5 job, because any given day pushing through the pain caught up with me and I ended up not being able to get out of bed at all. This went on for a few years, but I never fully gave up hope. Each day I spent a minimum of 30 minutes researching my condition to no avail.
Then January 2016 everything came crashing down. I spent 28 of the 31 days in bed, unable to move, this was a reminder that everything catches up to you — I had tried to push through by myself for too long. I started reading chronic pain forums online, and it motivated me to become my own advocate and get the answers I deserved. I worked with my GP to get into any specialist I could, and get any test that could rule anything out. I went for more scans, blood work, and even a tilt table test, all while I kept up my own research.
One afternoon in October 2016 I was lying in my darkened apartment when I googled a phrase that I had searched a million times before. This time an article from the Boston Globe in 2012 came up, about a boy with something called New Daily Persistent Headache (NDPH). As I clicked through and read about the symptoms I was overcome and I sat sobbing for hours. All my symptoms had been pretty generic so they were able to fit into many conditions I read about up until this point, but this was the first time that every single thing on the list described my condition.
- Headache that is consistent from onset. – CHECK
- In certain patients it has found to be resistent to all medication. – CHECK
- 82% of patients were able to pinpoint the exact day their headache started. – CHECK
- 55% reported lightheadedness. – CHECK
- 30% of the patients, the onset of the headache occurred in correlation with an infection or flu-like illness. – CHECK
- 68% reported nausea. – CHECK
- 66% reported photophobia. – CHECK
- 61% reported phonophobia. – CHECK
- 38% of the patients had a prior personal history of headache. – CHECK
I continued to cry, because the diagnosis was something I had been longing 5 years for, but it was just a name. Being resistant to medications makes this condition sometimes impossible to treat. And it turns out I get to be one of those not-so-lucky ones.
This last week I was diagnosed officially with NDPH, in addition to chronic Migraines (15 or more migraine days a month). I have also been told we are pretty much out of options. Since this has all started I have tried every medication they know of, naturopathic medicine, osteopathic medicine, vitamin supplements, I have tried cutting out any sort of dietary restrictions, been to sleep clinics, I even unhealthily dieted loosing 100lbs, the list goes on ad nauseum, nothing has stopped the pain or the lightheadedness, and right now I seem to be in a stage of the worse. I can barely get out of bed and have been like this for over a month. This is why you haven’t seen me post of on social media.
Now I know this post is sounding really hopeless, and let me tell you this week I am feeling a lot of that. Being told you are out of answers can do that to a girl… As I am posting this it has been 2,822,400 minutes of headache pain and lightheadedness with no promise of end in sight. I would be lying if I said that it didn’t get to me, if I didn’t feel isolated, and hopeless, if some days I didn’t just stare at the clock and wait wish for the day to be over, but as I had to be be my own advocate to get answers, I also have to be my own advocate in life. I have to see the joys and the triumphs on my own path amongst the pain, because it is no one else responsibility but my own.
I am very grateful for this whole crappy thing for one very big reason. THIS. I would not be here blogging if I didn’t run out of options. I love blogging, and now I wouldn’t trade it for anything. I can’t imagine my life without creating content I am passionate about, to share with all of you. It is still extremely difficult to share that this was my journey here. We are told that the narrative we should be going after is the #GirlBoss fighting to forge your own path on your own volition, when really I was out of options. In an industry that is heavily influenced by appearance, it is hard to present yourself as weak, at least weaker than the woman I show in my instagram photos.
I may not always be feeling like the smiling woman in all my photos, after getting dressed up for a photoshoot, more often than not you will find me recovering in bed the rest of the day. From time to time I may disappear, I may need to stay in bed, and fight through the pain and lightheadedness to go on for another day, but I will always come back swinging. I am so grateful for all of you who are still here and are patient with me.